I turn 39 on the 28th. For the first time in my life, I’m not excited about my birthday. It’s not the typical existential dread of getting older. I like the wisdom that has come with age and am OK knowing that the remaining years in my life are dwindling. The distress comes from knowing that migraine will have an outsize role in determining how I spend those years.

I have been housebound for nearly two months. Confined to the couch, I have to wonder: Will I have another six months of this then get back on track with my dreams? Or will I spend another decade trying fruitless treatments while science catches up with my body?

Thinking of everything I’ve lost to chronic migraine—friends, work, school, hobbies, living in Seattle…—brings me to tears. But only one loss is a fresh bleeding wound whenever I think of it. Time. Time is the only thing I can never regain, repair, or replace. Approaching my birthday prone on the couch, I ask: How much more time will I lose to migraine?

There is so much I want to do with my life. Writing to do, family to spend time with, friends to see and make, countries to travel to, bands to dance to. I don’t waste any minute of my time when I feel good (or even halfway decent). On those days, I go nonstop and crawl into bed at night satisfied and happy that I’m tired from exertion, not migraine. But those hours don’t add up to enough for me reach my goals.

In January, I finally believed that the improvement I experienced in 2014 was real and lasting. I finally believed that I had enough energy and cognitive ability to bring the book I have in mind to fruition. In March, that belief was shattered. I know the book will happen, but not until migraine stops absorbing all my physical and mental energy. Will that be next year? Five years from now? 20? I have work to do. When will I get to do it?

Last Wednesday

The 17-year-old main character in the novel I’m reading is trying to discern the meaning of a poem her grandfather shared with her before his death. It’s a future society and the poem is illicit, so Google is of no help. Over and over, she puzzles through these lines:

Do not go gentle into that good nightRage, rage against the dying of the light

It’s a Dylan Thomas poem that’s probably familiar to you. It was to me, but the words hit me harder than they ever have before. As the main character begins to understand what the poem means to her, I considered what it means in my life.

My 30s are nearly over and I don’t know how much more time I’ll lose to migraine. Now matter the number, the one certainty is that I will spend that time raging against the dying of the light. I’m still breathing, therefore I’m still trying to get better. I will not go gently. I cannot. I love life too much to give up.

My health has been on a steady slide since June. I’ve spent the last six weeks mired in horrendous fatigue. I cannot think and can barely function. My frustration is high. I’m scared of what’s to come and grieving for what I’ve lost. Overall, I managing to stay relatively optimistic and present in the moment, but I have some bleak times.

There’s more to tell you than I’m able to write. I’ll leave you with the best news I have right now: a gastroenterologist has finally agreed to see me. There has to be a reason I get a migraine every time I eat; whether or not that reason can be found remains to be seen. My appointment is on October 6 and I see my headache specialist on October 7.

Daisy Griffin, a 14-year-old who has chronic migraine, raised $12,110 for migraine research by sailing alone across the Long Island Sound. She will donate 100% of the money raised to the Migraine Research Foundation.

Daisy’s Migraine Story

Daisy has had severe migraine attacks since she was four, which have progressed to chronic. Like so many of us, she has tried a slew of treatments, from medications to supplements to yoga to biofeedback. She’s had two in-patient hospital stays to treat migraine. Thanks to a couple preventive medications, she’s feeling better now, but still has a headache every day and migraine attacks at least a few days a week.

When I asked what she wished people understood about migraine, she said, “I really wish that people would get that I’m not just having a headache. I have a headache all the time and a few times a week it becomes a severe migraine. A lot of times people tell me how lucky I am that I miss school all the time. I actually feel lucky when I can make it to school, or even when I can get out of bed.”

Sailing for Migraine Research

Daisy has been sailing avidly since she was eight years old. It’s one of her great passions and she fears chronic migraine could force her to give up. Since she’s been feeling better, she sees this sailing trip across the sound as “sort of like me saying: Take that migraines! I can still do what I love!”

Daisy sailed an 18-foot spinnaker, the largest boat she’s ever sailed by herself. The sailing itself was much easier than she expected because the wind wasn’t very strong. But little wind also made for, in Daisy’s words, a “loooong” trip.

Having chronic migraine meant that Daisy’s trip could have be derailed by the ever-present threat of another attack. She was hopeful that even if she had a migraine attack, sailing would distract and relax her, as it usually does. To prepare, she made sure she got enough sleep and drank a lot of water before the trip. It worked! Daisy’s head hurt a bit, but she didn’t have a migraine attack. (Her father trailed at in a motorboat, so she could radio him for help if she had an attack. But she didn’t need to.)

Fundraising

In addition to the sailing trip, Daisy has raised awareness and donations through a booth at local fair (where she hosted a migraine trivia game) and a lemonade stand with her siblings and cousins. She wrote to groups and individuals to solicit donations and publicize her trip. A generous donor agreed to double the amount that she raised, which brought the total to $12,110.

You can still donate to Daisy’s campaign and the Migraine Research Foundation through CrowdRise.

Way to Go, Daisy!

I’ve never met Daisy, but I’m tearing up as I write about her accomplishments. Much of her young life has been dominated by migraine. Instead of trying to forget about migraine as soon as she felt better (as most of us would have done whether 14 or 57), she threw her newfound energy into raising awareness and funding for research. Her efforts took remarkable dedication and resourcefulness. It’s an impressive feat at any age.

While responding to a Migraine.com email about a post I was scheduled to do this month, I tried to say it was unlikely to happen because my health was still topsy turvy. My phone autocorrected to tipsy turbulent, which I may like even better. Though tipsy implies fun, which this has not been.

The short version: my migraines are different than they were before the infusions, but still come on every time I eat. I thought I had them figured out, then got a doozy. Then I thought I found a medication that helped, but it made things worse. I’m recovering from that medication now.

I move from optimistic to panicked to OK-maybe-I-can-figure-this-out, usually multiple times each day. I told a friend that I couldn’t get together because of a health crisis. This scared her. When I said it wasn’t life-threatening, she responded that she was glad it wasn’t serious. Except that it is. It’s not going to kill me, but it is serious. It could completely change what my days look like, moving me from writing and working and taking care of myself to a lump on the couch. It could mean that the freedom I enjoyed for a year will once again disappear. My drug-related freakout last Sunday made it all too clear that I’m terrified to go back there.

I told my doctor before the DHE infusions that if I got back to eating 40 foods without them triggering migraine attacks, I’d be thrilled. Now, I’d be thrilled to go back to being able to eat those 40 foods and controlling the ensuing migraine attacks with naratriptan and Midrin. It’s not a long-term solution, but it would be better than feeling like I’m in freefall.

So, yeah, things are topsy-turvy… tipsy turbulent… incredibly scary. I hope I’m headed in the right direction, but won’t know for at least a few more days.

P.S. Blurry vision is a new migraine symptom I developed this spring. It comes and goes; it has been in full force this week. I’m adding your 30 Things each day (we have more than 100 now! plus more on other blogs and Migraine.com), but that’s all the screen time I’m getting in. My spirit is with Migraine and Headache Awareness Month and I will highlight your stories, even if it’s long after June is over. Thank you all who have shared. I love learning about you and seeing your optimism, perseverance, and strength. If you haven’t had a chance to read these stories of fellow readers, please take a look at 30 Things. Want to share your story and enter to win a pair of TheraSpecs or a coaching session with me? Take a look at these instructions and be sure to submit before midnight Pacific time on June 29.

Stopping the methysergide seems to have resolved my migraine crisis. My mood has been fine, though I still feel fragile. I’ve had no aura since Sunday and have only had mild migraine attacks the four times I’ve eaten. And that’s without taking triptans or Midrin after eating.

As I was puzzling over the weirdness of this, I got a text from a friend who had a similar response after an IV of DHE, compazine, and a steroid a couple years ago. (Not the aura, but the emotional surge.) She had physical symptoms, but also described being terrified that she would never again feel better. It started the day after the IV stopped. I started to suspect the steroids, then heard from a reader who had a similar response to an ergot. While I still don’t have any answers, knowing I’m not the only one makes it a lot less scary.

I’m still a bit out of it and fatigued. I’m not sure if it’s the small migraine attacks being triggered by food, if I’m recovering from Sunday’s breakdown, or if my body is still adjusting after ending the infusions. Whatever the case, I’m not freaking out.